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Advanced HIT benefits are not predicated on hospital-provided EMRs

Posted by paulwicks on 10 Sep 2010 at 13:47 GMT

We read with interest the thoughtful analysis (by Wells et al) of the potential for health information technology (HIT) to mitigate cardiovascular risks in patients. The authors state that most of the innovations described in Table 1 (e.g., adherence reminders, disease management guides, and outcome monitoring) are predicated on the presence of an electronic medical record (EMR). They later go on to say: " is just one example of harnessing social networking to provide peer support for patients with the same conditions. However, the social networking phenomenon does not easily lend itself to rigorous research of effectiveness."

We would like to suggest that innovative ways of tackling cardiovascular disease (CVD) risk are not necessarily predicated on a provider-driven system such as an EHR, but could in fact be delivered via a patient-driven personal research platform such as PatientsLikeMe. For instance, PatientsLikeMe has recently published evidence that use of our site by people with serious health conditions has the potential to improve adherence and health literacy (Wicks et al 2010). Patient engagement is one of the advantages that a system like ours could have over a hospital-based EMR; many of the programs outlined by Wells et al will rely on patients to enter data repeatedly over a long course of time, and maintaining an adequate level of data density will be difficult. Networks like PatientsLikeMe are completely dependent on patient engagement to be successful, and therefore we have had to prioritize ease of use, accessibility and, most crucially, the delivery of value to patients in return for their participation – i.e., "give something, get something." By contrast, most traditional HIT systems are built with other primary goals in mind (not patient engagement).

In terms of research, there is optimism from senior researchers that patient-centered personal research platforms such as PatientsLikeMe are already providing rigorous levels of research quality. For example, a recent editorial in Neurology describes our efforts to identify a positive effect of the drug lithium carbonate in ALS (Armon, 2010) as such: "PatientsLikeMe—a remarkable, patient-generated, Web-supported database—sounded a discordant note in December 2008 when it reported that after 4–6 months’ observation of 162 patients, lithium failed to slow decline in self-reported scores on the ALS Functional Rating Scale–Revised (ALSFRS-R)... Further, no difference was noted on comparison with controls matched for prognostic factors."

As PatientsLikeMe develops new communities and new functionality, our hope is that specialists in each field will highlight areas of importance to their patients. We believe we can evolve our platform rapidly to meet patient needs as well as publish high quality research from the data captured and shared within our platform (see also:


Paul Wicks, PhD
R&D Director, PatientsLikeMe

James Heywood
Chairman, PatientsLikeMe

Wicks P, Massagli M, Frost J, Brownstein C, Okun S, Vaughan T, Bradley R, Heywood J. Sharing Health Data for Better Outcomes on PatientsLikeMe, J Med Internet Res 2010;12(2):e19

Armon C. Is the lithium-for-ALS genie back in the bottle?: Not quite. Neurology 2010;75;586-587

Competing interests declared: PW and JH are employees of PatientsLikeMe and hold stock and/or stock options in the company